Comments on: Brian and Leighanne Littrell Urge Parents to Follow Their Instincts

By: Ellie

Ellie — Thu, 08 Jan 2009 08:40:50 +0000

It makes me sad that it took that many doctors’ visits to get a real diagnosis. My three-year-old cousin was ill and her mother immediately took her to the same family pediatrician that both my sister and I always went to as kids. The doctor said it was the flu and sent them home. The next day my cousin was much worse and was rushed back to the ER. Turned out to be meningitis, but it was too late. She fell into a coma and died.

That pediatrician stopped practicing after that, as she probably should have. It seems doctors are not giving the time and proper care to patients these days. It seems that too many go into the profession for the money now. Which is very, very sad. I know that there are also many doctors who are also overworked with too many patients to see. Even getting myself into see some of my doctors seems to take a month! Healthcare in America is now soulless and outrageously expensive.

Little Baylee is lucky to be correctly diagnosed and on the road to recovery. He’s also lucky to have parents with the resources to be able to keep taking him to doctors when they felt his diagnosis was incorrect!

By: Beth

Beth — Wed, 07 Jan 2009 06:08:10 +0000

My son was diagnosed with KD Dec ‘04 at 9 months old. We are very very lucky to be in San Diego (his Dr is the UCSD Dr linked above!)and have walked into children’s hospital and have them recognize it immediately. Yes, it does run it’s course, but gone untreated, or treated late, leads to heart problems.

I know the Dr’s were “discouraged” with the Travolta’s public misinformation distribution re: the carpet cleaning products. As a celebrity you have the opportunity to promote awareness, and they didn’t. (this does not mean that they don’t get my deepest sympathy for the loss of a child.. every parent’s worst nightmare!)

But I am thrilled that the Littrell’s are publicly speaking about their situation. KD’s biggest issue is misdiagnosis, and the more information that parents have about the disease, the better chance they have for their children to be treated.

I’m happy to say, my son is now almost 5 and 100% healthy..

By: Mary

Mary — Mon, 05 Jan 2009 15:01:55 +0000

I am 100% behind what she says follow your instincts. I always do that with my daughter. She’s right doctors do not know everything. Their degree doesn’t give them full knowledge of everything in the medical field. And listen to your child, it is their body after all.

By: momma

momma — Mon, 05 Jan 2009 13:37:54 +0000

I think the most important point here is that these parents listened to their child about his symptoms (his heart murmurs) and then worked as his advocate in getting the most out of their health care. Children describe and exhibit symptoms in their own way, so parents and health care workers have to take the time and make the effort to hear, and see, what the children mean.

By: katie

katie — Mon, 05 Jan 2009 06:44:58 +0000

My Son was diagnosed with this disease at 8 months old, and it was only due to our persistance with taking him to the hospital each day that made the doctors believe that we were not just making this up! Ha had all the typical indicators for Kawasaki disease, but was into day 11 when he finally was admitted to hospital and had the gamaglobin iv, thankfully no damage was done to his heart though we too have the yearly checks, but he does have arthritis as his joints were affected by the disease…At 3 he is still affected by this… For us we dont know if and/or when the affects will dissipate as still so much is unknown about this disease.

By: Susan

Susan — Sun, 04 Jan 2009 23:46:04 +0000

Thea–It didn’t say “some studies”. One of the leading KD physicians in the country is at UCSD and has been trying to find answers about this disease for years. Also, Wikipedia is NOT a reference! Anyone can put or edit whatever they want. If you want more information, look for reputable websites. Read the research. Physicians are examining genetic links.

By: just lei

just lei — Sun, 04 Jan 2009 19:25:26 +0000

my son who is now 6 had kawasaki when he was 6 months old. he was treated with the gamoglobin iv and a week later relapsed. he was treated again with gamoglobin iv and is in great health now; taking a baby aspirin once a day. in the beginning we were told we had to restrict his physical activity, but he’s doing fine now. we visit the cardiologist about once a year. my heart goes out to baylee and his parents as well as the travolta’s.

By: Donna

Donna — Sun, 04 Jan 2009 18:43:44 +0000

My daughter, who is now 27 had Kawasaki Disease when she was 5 years old. Normally the disease affects male children. It is very rare that female children get Kawasaki’s. She started out with symptoms of the flu but her fever was so hight ( 104) and we could not get it down. Her fingers and her toes turned blue and had blisters and pealing. After several trips to the Dr., she eventually looked in a medical book to figure out what my daughter had. We had to administer several baby asprin every 4 hours to thin her blood. I took her to a heart Dr. serveral times over a 4 month period to check her heart and make sure she was fine. She is perfect. Never suffered a seizure.
It was very scary for us because the disease is so rare. My heart goes out to the Lettrell Family.
Regarding the terrible loss of Jett Travolta, I find it hard to believe that Kawaski’s had anything to do with having a seizure. Regardless, the loss is so painful.

By: Alexis

Alexis — Sun, 04 Jan 2009 18:23:18 +0000

My now 1 year old daughter was diagnosed with Kawaski Disease Oct. 10/08 like this story it was a night mere doctor after doctor hospital visit after hospital visit all of them saying its just a cold like where did they get there damm med licenc. our daughter had a rash head to toe red blood shot eyes swollen throat red toung swollen hands and feet a very high fever for weeks and finally by the time she was diagnosed was really late into the desease her hands were already starting to peel. Since the late diagnose it has left her with a Aneurism on her main artier having an echocardiogram every 6 weeks our next appointment #4 is tommorow hoping for the best this time.

Our daughter was also born a month early making her very small being under 15lbs.

I dont wish this on anyone the stress is enough to drive you crazy.

Thank you for hearing a little part of my story

By: Les

Les — Sun, 04 Jan 2009 05:05:56 +0000

I hope they really do go forward with their funding to help other parents. Most parents would not be able to afford additional medical tests if their doctors did not think it was necessary.